Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Please Read: Can Someone Help?


Mern27

Recommended Posts

Mern27 Newbie

I am new here and see that there is a lot of informative people on here so I'd like to ask some opinions on my 5 year old daughter's health. Since she was born, she was always very gassy and had very loose stools. When she was 3, she began to complain of tummy aches (pointing more towards the belly button area). When she was 4 we noticed blood in her stool so we took her in for allergy testing and it showed very significant milk allergy and mild egg allergy. That was about 8 months ago. We have taken her off all milk proteins and there is some improvement, but now she complains of tummy ache (higher up now) when she eats. Her stools now seem to be very pale...kind of grayish. Her skin is very pale, dark undereye circles and quite skinny. The doctor said she tested negative for wheat allergy in which he put in the same category as Celiac disease when he was talking. Is there another test that can be done besides just normal allergy bloodwork? Does this sound like possible Celiac? I feel like the doctor did not do the Celiac testing...isn't the wheat allergy test different?

I would appreciate any input!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Hi Mern,

I'm sure others will pop in with more ideas, but I wanted to welcome you to the board.

Yes, wheat allergy testing is different than Celiac.

Request that your doctor run the full Celiac blood panel, or find a doctor that will.

The panel includes: (from Open Original Shared Link

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Best of luck, and I hope you find answers for your daughter.

akflboyd Rookie

Does she eat a lot of soy products? I have had my daughter on the Gluten-free Casein-free diet but was giving her soy yogurt. She kept complaining about her stomach hurting too. She is no longer eating the soy yogurt and we have not had any problems.

You have come to the right place! I am new to all this too so I don't dare act like I know much. Everything I have learned has been from people on this website. I cannot tell you how supportive and helpful it has been for me. I think the parents know more here on the website than any doctor.

Good luck and I hope you find the information you are looking for!

Kathleen

Mern27 Newbie
Does she eat a lot of soy products? I have had my daughter on the Gluten-free Casein-free diet but was giving her soy yogurt. She kept complaining about her stomach hurting too. She is no longer eating the soy yogurt and we have not had any problems.

You have come to the right place! I am new to all this too so I don't dare act like I know much. Everything I have learned has been from people on this website. I cannot tell you how supportive and helpful it has been for me. I think the parents know more here on the website than any doctor.

Good luck and I hope you find the information you are looking for!

Kathleen

Thank you for your reply. The only soy I have her on is soy milk...ocassionaly soy ice cream (once a month maybe). She tested negative to soy reaction so I would think it must be something else. Did your daughter have teeth problems? My daughter has had probably about a dozen cavities and I take very good care of her teeth. I heard that this can be a sign of malapsorption? I'm sure the dentist must think I am an awful teeth brusher! She also has swollen abdomen alot.

Mary-Ellen

MammaW Newbie

Hi there, I am very new to all this too. We don't even have a diagnosis for my 1 year old, but I have learned SO much from everyone here on this board. I wish I could remember all the good postings I have read that sound similar to yours, but I guess I would just say keep reading and reading here on this board -especially the "parents with kids" section and you will soon have many suggestions. I personally am considering the enterolab testing that everyone has suggested, but I still haven't decided yet or I may just stay gluten-free for my little guy for now and see how it goes. It is a week today of gluten-free and we have it a little rough because of a known rice allergy. so many gluten-free foods are made with rice. but good luck and definitely keep reading on here. Everyone has been wonderful!

confusedks Enthusiast

I just wanted to say that even though she came back negative for a soy allergy, she may have a soy intolerance. The difference is an intolerance won't kill her. A soy allergy would give her symptoms like hives, weazing, etc. I have a soy intolerance but I also tested negative to the soy scratch test and blood. But it does give me terrible headaches AND stomach problems.

Kassandra

Darn210 Enthusiast

Hi Mern, Welcome to the board.

Typically, Celiac disease will be diagnosed through a GI doc, not an allergist. Celiac disease is NOT an allergy. I'm assuming you don't have a GI (yet ;) ) so it may be quicker if your pediatrician would be willing to write up the lab request for a Celiac panel (the list that Happygirl had in her post). You may also want to add the Celiac gene panel which will tell if she is genetically predisposed to it. You're daughter has racked up quite a few of the "typical" Celiac symptoms. Don't except "not allergic to wheat" as a definitive answer. I think you're on the right track doing some research here. Good Luck.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

the bad teeth is so common for children with a gluten problem. If you are not wanting an official diagnosis, I would just go gluten free & dairy Free & no soy milk, some soy milk etc, is not gluten-free. no one really needs soy or dairy.

my 9 year old double DQ1 granddaughter has lost all the enamel on her teeth. Her little borther age 7 has had the cavity problems and has a couple of spacers... Dentists need to be aware that excess cavities and dental problems in children is almost always due to a gluten problem, well unless they are 5 & still nursing a bottle at night ;) these grandchildren are not gluten-free because it just ruins my sons life - his words not mine. I am a little more than upset to see their health going down the tube... The 9 year old was also battling pneumonia most of last year & used to have asthma type attacks & has numerous hives & itchy rashes

& yes, I love Enterolab.com for testing, especially for children. i do not believe in an endoscopy for a child & if you have read the posts about the dangers of anethesia for children which everyone in the medical field knows & also they can easily get a hole poked in their intestines or have bleeding problems... etc etc. and not counting the fact that everyone should stay as far away from a hospital as they can unless they absolutely have to be there because of all the super bugs that hang around hospitals, & the hospitals have spent years glossing over that fact...

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.